Amanda, @TrappedAtMyDesk on Twitter, Dies, Age Unknown

She is survived by her 5,141 followers, but did she ever exist?

Perhaps by now you’ve seen one of the latest viral YouTube phenomena, a moving montage set to Passenger’s hauntingly bittersweet “Let Her Go.” The four-minute video documents the life and death from a brain tumor of a young government employee in Ottawa, Canada, named Amanda (aka “@TrappedAtMyDesk”), as told through her Twitter feed.

@TrappedAtMyDesk’s tweeted life begins unremarkably enough on November 14, 2009, with updates about how to meet fellow Goths in a new city and wry, Dilbert-like observations on the monotony of bureaucratic office existence. (“Is it wrong to want a cattleprod to use on people in the elevator who are too busy to move when I say ‘excuse me?’”) But then the narrative takes a dark turn. In January of 2013, Amanda is diagnosed with a malignant brain tumor and given three months to live. We watch as she reevaluates her priorities. She quits her job, and spends two carefree months traveling in Central America, drinking “cheap booze.” She resolves to reach out to her estranged mother and gains a wrenching sense of clarity: “Don’t spend time being angry at people. Forgive them. Life is entirely too short.” And then, almost three months to the day after her diagnosis, Amanda’s brother James tweets that she has passed away.

https://twitter.com/TrappedAtMyDesk/status/323840866483589120

Amanda’s story has clearly touched a nerve. After finding its way to Jezebel, where it was dubbed “Your Evening Cry: A Life Told Through Twitter,” the video took off. Buzzfeedpackaged it as “The Incredible Story Of A Woman’s Final Months Fighting Brain Cancer As Told Through Her Tweets.” It made the front page of Reddit. The original YouTube video has, at last count, 937,928 views, and the multiple ripoffs—including versions subtitled in Spanish, Turkish and Korean —have countless hundreds of thousands more. People are tweeting about @TrappedAtMyDesk from Venezuela, Kuwait, the Philippines, Turkey, and Indonesia; newspapers in Ireland, England, and Australia have written about Amanda. The video has made grown men sob and rendered people speechless; it’s inspired at least two songs. Commenters have called the video “poignant,” “heartbreaking,” “humbling,” and “one of the most important things I’ll watch this year.” “That video changed the way I think about life,” reads a typical response.

The @TrappedAtMyDesk video is the creation of Toronto-based blogger and social media consultant Shannon McKarney, who says she didn’t know or follow Amanda, but saw references to the young woman’s death in her Twitter feed last April.

McKarney went back and read Amanda’s timeline and was struck by the lesson it taught about the “very public digital traces” we leave behind. “Every couple of weeks, I would go back and read it and say, ‘God! This is sticking with me and sticking with me,’” she explained when we spoke on the phone. Last fall, McKarney set Amanda’s tweets to music as a presentation for a social media conference. But she continued to be haunted by the story. A preliminary search for more information about Amanda failed to turn up anything—no last name, no family members. On January 7, McKarney decided to post the video on her blog, thinking perhaps someone in Ottawa, where McKarney used to live, might see it and lead her to Amanda’s family.

Although McKarney jokes that only five people usually read her blog “on a good week,” the video, also uploaded to YouTube, soon exploded.

“The way it took off was absolutely not expected or anticipated,” says McKarney “I guess it touched a lot of people the way it touched me.”

I decided to see what I could find about Amanda. (It is, after all, apparently the year of the viral debunk.) An extensive search yields almost no real-world evidence of Amanda’s life—or death—beyond her Twitter account. It appears that poor, doomed Amanda, currently inspiring tears the whole world over, might be ready to take her rightful place in the Internet hoax pantheon, right next to “Diane in 7A” and Manti Te’o’s girlfriend.

Next stop: the Twitter feed. The only photo Amanda posted to Twitter—of herself or anyone else—was her profile picture.

The HTML code reveals that the image, which may have been Photoshopped, is a screenshot rather than a jpg, but it doesn’t provide any concrete clues. And, yes, I tried the old reverse image search trick; it yielded no hits.

As for the tweets themselves, there’s a marked insularity to @TrappedAtMyDesk’s feed, as if Amanda were performing in character for an audience rather than conversing; most actual Goths don’t feel the need to constantly talk about how many Goth activities they’re taking part in. Of Amanda’s 169 tweets, only nine of them even begin with an “@” symbol, meaning they were directed to a specific person. (“I’m getting the distinct feeling that I am talking to myself. Did I do or say something wrong?” she once asked.) Her tweets never convey the kind of intimacy that would suggest Amanda was interacting online with anyone she actually knew—no references to last night’s party, or a lunch date, or a hockey game with friends.

I contacted the first five people to follow @TrappedAtMyDesk on Twitter, presumably the first to become aware the account existed; four had no knowledge of who she was offline and a fifth did not respond. (By contrast, only two of my first eight Twitter followers were people I didn’t know personally.) Just to be thorough, I reached out to every person I could find who appeared to have mentioned or been mentioned by @TrappedAtMyDesk on Twitter. Some did not reply, but of those who did, not a single person had actually met Amanda or could confirm any details of her life, her illness, or her death beyond what she wrote on Twitter. All of this could easily be explained if Amanda were trying to keep her Twitter life separate from her real life, perhaps for professional reasons, but it is also a red flag of Catfish-iness.

“Amanda was a complete mystery,” says David Hicks, an online marketing consultant in Ottawa who is part of the social media scene there and followed @TrappedAtMyDesk on Twitter. Hicks says several people tried to find Amanda when she said she became ill—she never replied to his DM—but nobody could get a bead on her, which struck him as odd. “Ottawa has a pretty active and tight-knit social media community so normally if you look, you know somebody who knows somebody,” he explains via email. “I just find it odd that she never crossed paths with people. Again, it’s possible she used a different name [or] pic online so we’d never know, but her situation would stand out I’d think.”

Claudia Petrilli, who works for an Ottawa swing dance school, thought she might have recognized the picture of Amanda as someone she once saw chatting at a local Twitter meet-up. “I remember the face. Vividly. I remember the smile,” she emailed. But she never spoke with the young woman with the Goth style and the memorable black lipstick, and she was “shaken” by the news of the death: “She was so young!” Petrilli also readily acknowledged her memory can be “fuzzy” and she may recall the face from elsewhere.

There are moments where Amanda does appear to intersect with the verifiable real world, like when she tweeted that she had attended a charity event:

https://twitter.com/TrappedAtMyDesk/status/25654371351

I reached out to the organizers of that event, who say that over 500 people attended, including two women registered as “Amanda.” Both are most definitely still alive. And both deny knowing anything about @TrappedAtMyDesk.

If Amanda’s elusiveness during her short life was merely a function of her desire to stay private, why, then, can nobody find her posthumously? Stories about the search for Amanda have now run in the Ottawa Citizen, Ottawa’s Metro, the Toronto Star, and on Canadian television, and yet nary a soul has come forward to reveal who she was. The Citizen story doesn’t even have a single comment. I have sifted through hundreds of online comments and tweets about @TrappedAtMyDesk and have found only one, on Jezebel, from someone who claimed to know people who had “hung out” with Amanda “IRL” —in real life—and had talked about her death. But not a single person has contacted Shannon McKarney, who has made quite clear she would like to hear from Amanda’s family and friends.

Spokespeople for the largest of Canada’s federal employee unions, the Ottawa Hospital and Statistics Canada, whose offices are near a restaurant Amanda once mentioned on Twitter, were all unable to provide any leads; neither was the restaurant. The Brain Tumour Foundation of Canada, which runs support groups for patients, was bound by privacy regulations, but I asked them to relay my interest to Amanda’s family, on the off chance they had been in touch. Still no word.

Amanda’s brother “James” was Twitter-savvy enough to use Amanda’s account to notify her followers of her death, but he has not publicly acknowledged that her story is inspiring people in Nepal, Ukraine, and Sweden and being covered in the worldwide media. Could he really not know? Or perhaps he’s purposefully lying low. Okay. But not a single person recognizes the picture—or the narrative—as matching that of a friend/cousin/co-worker/neighbor/patient/fellow yoga class attendee who died of a brain tumor last April? Is that possible? Yes. Is it probable? No. When NPR posted on social media that it wanted to find the original owner of a twenty-year-old bat mitzvah shirt, it took blogger Adam Soclof less than an hour to find her.

Shannon McKarney is still not entirely convinced that it was a hoax, finding the lack of contact “surprising” but not “unbelievable.” “If enough time passes and nobody who says that they knew her comes forward, I’m probably going to start going ‘Well, you know… yeah,’” she said when we first spoke.

Reached again on Tuesday, January 28, McKarney admitted that she thought by now a co-worker of Amanda should probably have emerged. “Do I think this blows it out of the water, is it absolutely a fake? I can’t say that. I think there’s room for a healthy skepticism at this point.”

The length of time it has taken to find the real Amanda might raise healthy skepticism, but coupled with the holes in her medical narrative, the signs begin to point directly to Snopes-ville.

“My doctors office just called me to come in to discuss some test results,” Amanda tweeted on January 14 of last year. “That can only be bad, right? The [sic] don’t call unless its bad news.” Clearly thrown for a loop, Amanda tweets that she is “terrified” and “can’t sleep.” She meets with her doctor the next day, is referred to a specialist, and three days later, gets the dreadful news. “Results are in: advanced glioblastoma multiforme,” she tweets after the appointment: a vicious, deadly brain cancer.

Something about this seemed…off to me. Can you really first find out you have a malignant brain tumor from a wonky result on a seemingly routine test? Would someone really not expect a call to tell them they don’t have a brain tumor? I called neurosurgeon Dr. John Sinclair of the Ottawa Hospital, precisely the kind of “specialist” who would deliver such news. According to Sinclair, a patient ultimately diagnosed with glioblastoma multiforme (GBM), would first have an MRI or CT scan ordered in response to something like a seizure or neurological problems. (Were these the “bad test results” Amanda referenced?) Upon being referred to a neurosurgeon, a patient would next undergo more comprehensive brain imaging studies. While those images might be suggestive of GBM, the only way to confirm the diagnosis is through pathology: a sample of the tumor must actually be removed from the brain, either through a biopsy or during surgery. The entire diagnostic process typically takes seven to fourteen days for outpatients, he says; pathology results alone can require a five-to-seven-day wait.

And yet Amanda first receives the unexpected, unnamed “bad” test results on the 15th from what sounds like her primary care doctor. Somehow, just three days later, she sees a “specialist” who confirms GBM on the spot at her first appointment. The chronology is “highly unusual,” says Dr. Sinclair. “That would be logistically hard to complete.”

I asked my friend Dr. Atul Patel, the chief of trauma neurosurgery at Oakland’s Alameda Health System, to read Amanda’s tweets. He tried to reconcile Amanda’s ambiguous description of “test results” and “specialists” with the standard chronology of a GBM diagnosis, but he couldn’t make the sequence or timing add up, either. In his practice, he said, the process could take as long as three months. “She has worded it vaguely enough that it’s possible that this could be real, but it is exceedingly unlikely,” he says.

Despite her apparent youth, Amanda seems to have made the unusual decision not to treat her tumor, since she says she was given only three months to live. (With treatment, the prognosis for GBM is around fourteen to sixteen months, says Dr. Sinclair.) And so she quits her government job, wondering “if [she]’ll get [her] pension money,” and tries to figure out what to do “for the rest of [her] life.” The answer, apparently, is to travel. In a nod to what really matters at the end, Amanda leaves her iPhone on her kitchen table while she goes to Central America and takes it all in.

https://twitter.com/TrappedAtMyDesk/status/316252167549890560

What’s truly “amazing” is that a young person three months away from dying from an untreated brain tumor that Dr. Sinclair says causes “a very devastating progressive neurologic decline” —one with the potential to render her incontinent and in need of help walking—would be so eager to travel to exotic places like Honduras and Nicaragua, especially without a phone. But Amanda was apparently game. And perhaps that’s exactly why the story has resonated with the hundreds of thousands of people who have watched it… on their phones.

On April 10 of last year, Amanda tweeted her wistful farewell. “Tomorrow, I go back into the hospital for the last time.” She thanks everybody for the positive vibes. “Be good to each other,” she says in closing, and ends with the hashtag #quietlastnight. Just four days later she is gone.

https://twitter.com/TrappedAtMyDesk/statuses/322101114814230528

But wait. Though she actually never mentioned a first time in the hospital, or any time in the hospital, how exactly did she know in advance that she was going to have to be hospitalized the next day for the last time? And for what, exactly, if she were already dying at home? “It’s not unusual that you would go into the hospital knowing that you won’t leave,” says Shannon McKarney.

But Diane Phillips, who runs the website brainhospice.com and is the author of a widely used timeline chronicling the typical last weeks of a brain tumor patient, says it is “completely implausible” that a patient that close to death would have the wherewithal to know it was a final stay; most are approaching incoherence and unresponsiveness. To be able to see clearly enough and have the physical coordination to type out a tweet? “Impossible,” says Phillips. Dr. Patel agrees it would be “fairly unlikely” someone would be able to tweet so lucidly at that point in the progression of a glioblastoma.

Shannon McKarney believes that if you look hard enough, you will find inconsistencies in the stories relayed on anyone’s Twitter feed. While she acknowledges that it’s “absolutely possible” Amanda was a fake, McKarney took the story at face value, especially since Amanda didn’t seem to be asking for anything like money, or jockeying for attention: “Her voice just rang true.”

“We’ve all gotten so cynical,” McKarney continues. “This is just a plain story about an individual, but now we’re all looking for the holes.”

If @TrappedAtMyDesk was indeed a hoax, Amanda was oddly low-key about it; online fraudsters and the virtual malingerers suffering from what’s known as “Munchausen by Internet” typically don’t wait three and a half years after establishing their online presence to go for the dramatic payoff. (Although Amanda did hint at a breast cancer scare in 2011.) Amanda had only a few hundred followers when she was alive, and wasn’t particularly aggressive about trying to get more; the posthumous attention caused by Shannon McKarney’s video, however, has caused her Twitter following to swell to over 5,000, although the feed has been inactive since last April.

Whoever created Amanda’s Twitter feed could be certain that no one could come forward claiming to know her, which is, ironically, both the perfect cover for such a fraud and eventually the worst; initially it protects the hoaxer from being outed and, as time passes, implicates him or her. Of course, the obvious suspect in any hoax in play here would be McKarney herself, with some online sleuths even suggesting a resemblance between the two women, right down to a blemish on the left cheek, an accusation McKarney says makes her feel “sick to my stomach.” She categorically denies being @TrappedAtMyDesk, who actually tweeted her in 2010.

“The one thing I can say is that this wasn’t me. I didn’t do it,” McKarney says calmly. “If there is somebody out there who did do it, I don’t know if we’ll ever find them. Yes, it’s possible it’s a fake. I don’t think it is. I hope it isn’t. But if it was a fake, it wasn’t me that did it. Because it just wasn’t.”

At the other extreme, some are upset with McKarney precisely because she is not Amanda; they fault her for broadcasting a stranger’s story that wasn’t hers to tell in the first place. Still others defend her as having done a “good thing” regardless.

“Hindsight is 20/20,” McKarney told me. “If I had known this was going to go this big, I would probably have second thoughts about publishing it at all without having tracked it down further. I had no idea this was going to go this big.”

It is remotely possible—and heartbreaking—that Amanda did live and die of a brain tumor exactly as documented on Twitter and memorialized in the video, which is precisely why the story seems to have evoked such a visceral and empathetic response. But it seems more plausible that Amanda’s cancer story was invented or embellished, just like so many before it. It’s hard to know how much of the pre-cancer feed is a reflection of the real life of whoever was tweeting unless that person reveals himself or herself. As the New Yorker cartoon says, “On the Internet, nobody knows you’re a dog.” It’s almost as likely Amanda was a teenage boy in Iowa as it is that she was a sardonic Goth in an Ottawa office cubicle, although all signs point to the tweets having been written by someone familiar with Ottawa’s social media scene and the government culture there.

Critics will charge that trying to tease out the truth about Amanda is mean-spirited, like telling kids there is no Santa, or looking for the wizard behind the curtain: who cares if Amanda is real? Her words are undoubtedly inspirational and are having a profound impact. Commenters are using Amanda’s story as an occasion to open up about their own experiences with cancer, or about those of loved ones. Where’s the harm? It’s all good. But we should have the right to know if we are being moved by a true story or a fictional one; to know if we are crying over the words of a dying person or the words of someone imagining what a dying person might say. Just ask James Frey. And even if no money changes hands, it’s still wrong, on some fundamental level, to elicit people’s sympathy fraudulently—to break their hearts into “a million [little] pieces,” as the video did to one YouTube commenter—with a fable masquerading as a memoir.

Is the world palpably different if a million people watch a sad YouTube video about a dying woman’s Twitter feed and mistakenly think it’s real? Of course not. But unreliable information goes viral regularly, because so few people pay attention to the provenance of the things they “like” and “share” at lightning speed on social media. At what point in the life span of these tall tales that pass as “news” are we allowed to care about their veracity? At what point does the accumulation of all these insignificant falsehoods we now traffic in become, well, significant?

It’s especially ironic that Amanda’s story became popular as debate raged over a pair of newspaper columns questioning the social media usage of Lisa Bonchek Adams, a Connecticut mother of three who has blogged and tweeted in great detail about living with breast cancer. Adams, unfortunately, does not have the luxury of pretending she is ill. Those million people who cried for Amanda could easily extend their sympathy or write a song for any number of people with cancer who have documented their experiences all over social media with exemplary candor. There is, sadly, no need to be fooled by cheap imitations.

Amanda may no longer walk—or tweet—among us, but, three hundred days later, her Twitter account is still live, and her followers continue to gain in number. Her avatar hovers, trapped in virtual purgatory.